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  • Home
  • About Us
    • Meet The Team
    • Strategic Plan 2023
    • How We Started
    • George’s Story
    • Ten Years and Counting – looking back and looking forward
    • Contact
  • LFS / TP53
    • LFS Awareness
    • LFS UK 2024
    • LFS UK 2023
    • LFS UK 2022
    • LFS UK 2021
    • LFS UK 2019
    • LFS UK 2018
    • LFS UK 2017
    • LFS UK 2016
    • TP53 Testing
    • Mastectomy – Yes or No?
    • FAQ
  • Research
    • UK Study for Parents of Children with LFS
    • The MILI trial – reducing cancer risk with metformin
    • Towards a TP53 Registry
    • Interview with Min Lu
    • Interview with Galina Selivanova
    • Interview with Pan Pantziarka
  • Resources
    • LiNCR – Li Fraumeni Network for Clinicians and Researchers
    • Newsletter
    • UK Screening Recommendations
    • LFS Surveillance Protocol – Write to Your MP
    • Red Flags
    • Book recommendations
    • Alternatives to Radiotherapy
    • Blog
    • Useful Links
  • Trials & Data
    • Active Trials and Projects
    • Databases

Kozarate

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@kozarate

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Registered: 8 years, 10 months ago

I tested positive for Li-Fraumeni syndrome nearly 1 year ago at the age of 30. I had a prophylactic mastectomy immediately after learning of my diagnosis because my mother died at the age of 39 after a 7 year battle with breast cancer. I felt confident in this decision because I believe it wasn't "if" I would get breast cancer, it was "when". It was inevitably in my future. In the midst of preparing for the mastectomy I learned that I had a level 3 melanoma in my right leg. That was scary. I am very fortunate that both surgeries went well and that they were caught early. But now, after the dust has settled, I find myself sinking into a depression and a nasty roller coaster of emotions. I am also plagued by the realization that i may have passed this mutation onto my two young children. I plan to have them tested soon, but that in itself is emotionally challenging. I think that I could really use some support through connecting with others who are facing the same reality. Thank you.


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Last Activity: 8 years, 10 months ago

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